Autonomic Dysfunction + POTS + LUPUS + Tachycardia = Rejection Letter

@annaabernathy, getting that denial letter does feel awful. Some departments, like General Internal Medicine, there is more demand than appointments available. New patient appointments are prioritized on the basis of medical need. Availability depends on the nature and urgency of the problem and Mayo Clinic's ability to help (as determined by a Mayo Clinic doctor).

You do have options, for example you could ask your cardiologist to submit a physician referral. Sometimes physician to physician referrals can help.

You'll find more helpful tips in this discussion:
– Can't get an appointment: Any tips on what to do? https://connect.mayoclinic.org/discussion/cant-get-an-appointment/

Hi @annaabernathy- I’m so sorry this is happening to you. It’s a horrible, horrible feeling to receive that letter.

I can only share my own experience with Mayo, and unfortunately it hasn’t been very positive, especially with seeking treatment for POTS. I have not had success appealing a decision, though you can submit another request after a certain amount of time has elapsed (so I was told on the phone). You can also try requesting an appointment at another campus or asking your PCP to submit an appointment request for you.

The only time I got an appointment the conventional way was by physician referral. I was seen in Rheumatology because somewhat similar to you, I had widespread unexplained joint pain, small fiber neuropathy, and symptoms of POTS. I’m sorry to say they misdiagnosed me and missed the POTS diagnosis—they didn’t even refer me for autonomic testing. A year later I was properly diagnosed with a seronegative inflammatory arthritis and dysautonomia/POTS.

At any rate, all of my self-referrals were rejected except for the EDS Clinic at Jacksonville (where I was seen last year after a new crop of symptoms came up), which is relatively new and allows self-referrals with apparently no questions asked—I mean, you have to have suspicion of hypermobility or EDS, but they didn’t demand proof of anything like that, which surprised me. My sense is that’s a very unique case though.

I don’t know if this is true, but it's been suggested to me that physician referrals can be more successful. My PCP submitted a physician appointment request/referral on my behalf, and I was able to get an appointment. Unless things have changed, I believe there was an option that allowed him to fax up to 30 pages of relevant clinical notes, and I have to believe that helped demonstrate the lengths we had gone without getting clarity on a diagnosis. But when I did this two years ago, I was told a certain amount of time had to elapse before I submitted another appointment request to the same department.

There are also some departments that have much more demand for appointments, and so are more difficult to get into, so you may want to try a referral to another discipline, maybe Rheumatology your PCP thinks you have lupus?

Based on my experience the specialties that were most difficult were: Neurology and Cardiology. The schedulers assisting me in Internal Medicine specifically told me it was extremely difficult to get an Autonomic Neurology appointment. I needed an appointment with Neurology and I have proof of a POTS diagnosis from a top academic medical center in my region, and even with an internal order at Mayo Clinic Jacksonville and after filing a grievance with the Office of Patient Experience because they were not responding to requests from their own General Internal Medicine schedulers to get me on the schedule, Neurology refused to see me. When someone in their POTS treatment program (!) tried to help and got me an appointment, they cancelled it two months before without notifying me. One day I just discovered it had disappeared from my schedule.

After filing the grievance, they told me the current clinical picture didn’t suggest POTS (how would they know if they didn’t talk to me or consult my referring physician at Mayo or home?) and couldn’t validate the test results I provided from my hospital, which has one of the top 10 Neurology programs in the country (but no one who treats POTS) and therefore they did not feel they could assist me.

I was crushed, and I’m still angry, more about the way they handled it than anything else. I hear so much about how Mayo cares about the patient and even for someone who wasn’t given an appointment, Neurology treated me horrendously.

Anyway…I guess I’m trying to say you’re not alone and I’m sorry this happened to you too.

Based on my experience at Jacksonville, which I would think may have less demand than Rochester for POTS appointments, you may want to try a different medical center, if that’s possible? My PCP submitted a referral for me to Cleveland Clinic and they offered me an appointment, but I chose Mayo after I got in initially, so I didn’t end up going. They have a program similar in structure to Mayo where the care would be coordinated for a workup.

After the debacle at Mayo Clinic and being denied the POTS appointment there, my neurologist recommended the POTS Clinic at Johns Hopkins. They have a waiting list, but I was offered an appointment. I know you have multiple things going on, so I’m not sure if that would help as much, but thought I’d mention in case it might be of interest.

I’m wishing you all the best, truly I am.

I’m old and chubby now so it’s less of an issue, but I had very low BP all of my Childhood and young adulthood. Like 85/55. I was taken to an ER once after an accident and they were about to start a blood infusion until I told them it’s always that low. I’m sure you’ve figured out to stay hydrated. Keeping fluid volume high is the best mitigant. Take a multi vitamin and electrolytes like Gatorade as part of over hydrating. And then safety protocols of going slowly when standing from sitting or prone position. Always have either furniture to grab or an ability to sit back down if the wooziness starts.

Docs in the stone age of medicine could never figure out a real solution. But good luck to you!!

Anna, I have experienced the same rejection despite being a case multiple doctors have not been able to help. The letter I received stated that they do not believe that they can do any more for me than my doctors here can. To me, that means that because they don’t fully understand or have no real treatments available for widespread inflammation, a possible sub-clinical autoimmune issue, plus fibromyalgia, sudden onset of both hypothyroidism and now heart arrhythmia, chronic fatigue/ME, osteoporosis, gastroparesis, Reynaud’s, rosacea, and IBS combined, there is no point in me visiting them. Obviously on my side of things, this feels uncaring and frustrating. If a clinic that takes up one third of the entire city of Rochester, MN can’t manage to squeeze me in, then how can I be expected to find help at a smaller one whose physicians haven’t been able to help me in over 20 years of ever-worsening health?
I have fought to get in before, and this time, I’ve taken a 23 and me DNA test hoping it will turn up something that has been overlooked since my labs are always off but “subclinical” and becuase in my 20’s before Lyme testing was done, I suffered a tick bite followed by Epstein-Barr/pneumonia confection that lead to a cascade of health issues no doctor could explain or bother to test or treat me for.
You may want to consider trying to get your own answers, so you can demonstrate that you have something they feel they can help with.
Frankly, I blame insurance companies that fight having to acknowledge let alone cover adequate Lyme and persistent Lyme testing, among other suspected disorders, and yes, I do blame the doctors who know to what extent insurance companies dictate testing and such yet do not band together and speak out against their unethical policies.
But now there exists laboratory services and tests one can order like the DNA tests. Read about your condition online, find journal articles by using Google and search for scholarly articles (your condition/s) so you have a source they recognize as valid and find tests you can have done. If you can’t afford that, see if you qualify to participate in a study of your condition, etc.
No easy path forward, but better than no path.
I’m sorry it has been so difficult for you. Good Luck!

I lost my job because I could not get into a Neurologist in Michigan. After many months. I called Mayo
I was not sure what the issue was so I ask to see an internest, best thing ever. I got a appointment in 6 weeks. I had alot of thing going through my body. I had been sent to 7 different doctors. All of them gave prescriptions that made things worse. We spent almost 2 weeks. The first thing I was way over medicated. They sent me to several doctors from head to toe. I was diagnosed with Celiac, Migraines, Fibromyalgia and Auto I immune disease. Set me home with a plan.
Come to it my mother was diagnosed at Mayo 1966. She had Migraines, Lupus, Kidney and Lung disease. I never knew what she had. I did know she was going to have a Kidney Transplant but died before it was none. She died of Congestive heart failure at 50ys old. I would walk crushed glass to get to Mayo in Rochester.
I do I completely trusted everyone there.

I’m echoing that loudly. I’ve been slapped in the face with closed doors since going on Medicare. They rule the Docs in terms of the frequency testing may be ordered - or if it may be ordered at all. Some docs I have a longer term relationship with will tell me “Medicare won’t cover that …unless…”. So I do the groundwork of figuring out how my symptoms can be bundled into a working diagnosis and what testing will prove or disprove and present it. Sometimes the Doc won’t buy into a given scenario- so the pre-work and accuracy is important.

I recommend Nat’l Institute of Health .. aka NIH.. does a good job of reviewing studies and providing links which contain Synopses and frequently data tables.

I couldn’t agree more that Docs should use their fraternity better with insurers, including Medicare. Most would say they have because they are in a medical collective. They can’t refer out of the collective and the point is to raise the tide (profit) for everyone in the collective.

Anyway - it’s complicated. But you’ll be more prepared with being your own advocate and developing good theories/ questions. You just have to arm yourself with facts.

I’ve heard varying stories like this. I’m glad you were able to get into Mayo, but it seems a mystery as to how this happens and who has a positive experience. I have similar conditions to you (fibromyalgia, central sensitivity syndrome, an autoimmune arthritis, POTS, and more) and while I was seen once, I was completely misdiagnoses at Rochester. And as things progressed, multiple appointment requests or requests for follow-up were denied. Last year, I saw an internist at the Jacksonville campus, but the communication and coordination of care has been horrible and it hasn’t resulted in treatment options because the specialist orders I’ve received aren’t being honored—their own clinics are declining to see me.

It feels like night and day when I hear about people like you who’ve had life-changing experiences at Mayo and then think about what happened to me or some of the others who’ve commented who also were denied appointments. I don’t know what to make of it.

I wish that we all could have the kind of experience

You do not have to be referred by a physician if you have Medicare A&B and I also have Blue Cross / Blue Sheild as my 2nd.
Call your Medicare and your ask.

Google Normalyte. I have pots Sjogrens lupus fibro etc. I was carrying Gatorade around religiously. This has less sugar I believe and no dyes .. no preservatives. I had to find on my own to stay upright and functioning. How most of us are left to live to me is unsafe and sometimes unethical. Lack of coordination and communication when u have multiple issues isn’t ok. No one looks at the person as a whole. Been at this for nineteen years and fighting. A trip to Johns Hopkins. Things need to change for some of us patients who are really struggling to live a quality life.

I don’t know of anyone else has issues with their sodium. / water balance. ??? I hope one day for my daughter’s sake. They figure me out better 🙏🏻